Monthly Archives: August 2010

“Spinal-Fluid Test is Found to Predict Alzheimer’s”

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Big news from the Alzheimer’s community. A test of someone’s spinal fluid for beta-amyloid and tau is 100% accurate in terms of predicting who has Alzheimer’s and who has significant memory loss on their way to developing Alzheimer’s.

“So the new results are giving rise to a difficult question: Should doctors offer, or patients accept, commercially available spinal tap tests to find a disease that is, as yet, untreatable?”

“Many…believe that when PET scans for amyloid become available, they will be used instead of spinal taps, in part because doctors and patients are more comfortable with brain scans.”

Thanks to over 300 people who had spinal taps for this research, and some number who donated their brains upon death.

What’s the connection to the disorders covered here? Tau is a protein involved in PSP and CBD (but not beta-amyloid).

Here’s a link to a New York Times article on this news and full text, plus a link to the editorial that accompanies the “Archives of Neurology” journal article and a link to the research journal article as well (all available for free online):

http://www.nytimes.com/2010/08/10/healt … pinal.html

Spinal-Fluid Test Is Found to Predict Alzheimer’s
By Gina Kolata
New York Times
Published: August 9, 2010

Researchers report that a spinal-fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.

Although there has been increasing evidence of the value of these tests in finding signs of Alzheimer’s, the study, which will appear Tuesday in the Archives of Neurology, shows how very accurate they can be.

“This is what everyone is looking for, the bull’s eye of perfect predictive accuracy,” said Dr. Steven DeKosky, dean of the University of Virginia’s medical school, who is not connected to the new research.

The study, said Dr. John Morris, a professor of neurology at Washington University, “establishes that there is a signature of Alzheimer’s and that it means something.It is very powerful.

A lot of work lies ahead, researchers say — making sure the tests are reliable if they’re used in doctors’ offices, making sure the research findings hold up in real life situations, getting doctors and patients comfortable with the notion of spinal taps, the method used to get spinal fluid. But they see a bright future.

The new study is part of a tsunami of recent findings on Alzheimer’s disease. After decades when nothing much seemed to be happening, when this progressive brain disease seemed untreatable and when its diagnosis could only be confirmed at autopsy, the field has suddenly woken up.

Alzheimer’s, investigators now agree, starts a decade or more before people have symptoms. And by the time there are symptoms it may be to late to save the brain. So the hope is to find good ways to identify people who are getting the disease, and use those people as subjects in studies to see how long it takes for symptoms to occur and in studies of drugs that may slow or stop the disease.

Researchers are finding simple and accurate ways to detect Alzheimer’s long before there are definite symptoms — in addition to spinal fluid tests they also have new PET scans that show the telltale amyloid plaques that are a unique feature of the disease. And they are testing hundreds of new drugs that, they hope, might slow or stop the relentless brain cell death that robs people of their memories and abilities to think and reason.

But the PET scans are not yet commercially available, while spinal fluid tests are. So the new results are giving rise to a difficult question: Should doctors offer, or patients accept, commercially available spinal tap tests to find a disease that is, as yet, untreatable? In the research studies, patients are often not told they may have the disease, but in practice in the real world, many may be told.

Some say it should be up to doctors and their patients. Others say doctors should refrain from using the spinal fluid test in their practices. It is not reliable enough — results can vary from lab to lab — and has only been studied in research settings where patients are carefully selected to have no other conditions, like strokes or depression, that could affect their memories.

“This is literally on the cutting edge of where the field is,” Dr. DeKosky said. “The field is moving fast. You can get a test that is approved by the F.D.A., and cutting edge doctors will use it.”

But, said Dr. John Trojanowski, a University of Pennsylvania researcher and senior author of the paper, given that people can get the test now, “how early do you want to label people?”

Some, like Dr. John Growdon, a neurology professor at the Massachusetts General Hospital who wrote an editorial accompanying the paper, said that decision is up to doctors and their patients.

Doctors might want to use the test in cases where they need to be sure a patient with symptoms of severe memory loss and loss of reasoning abilities has Alzheimer’s. And they might want to offer it to people with milder symptoms who really want to know if they have the devastating brain disease.

One drawback, though, is that spinal fluid is obtained with a spinal tap, and that procedure makes most doctors and many patients nervous. The procedure involves putting a needle in the spinal space and withdrawing a small amount of fluid.

Dr. Growdon and others say spinal taps are safe and not particularly painful for most people. But, Dr. Growdon said, there needs to be an education campaign to make people feel more comfortable about having them. He suggested that, since most family doctors and internists are not experienced with the test, there could be special spinal tap centers where they could sent patients.

The new study included more than 300 patients in their seventies, 114 with normal memories, 200 with memory problems, and 102 with Alzheimer’s disease. Their spinal fluid was analyzed for amyloid beta, which forms plaques in the brain, and for tau, another protein that accumulates in dead and dying nerve cells in the brain. To avoid bias, the researchers analyzing the data did not know anything about the clinical status of the subjects. Also, the subjects were not told what the tests showed.

Nearly every person with Alzheimer’s had the characteristic spinal fluid protein levels. Nearly three quarters of people with mild cognitive impairment, a memory impediment that can precede Alzheimer’s, had Alzheimer’s-like spinal fluid proteins. And every one of those patients developed Alzheimer’s within five years. And about a third of people with normal memories had spinal fluid indicating Alzheimer’s. Researchers suspect that those people will develop memory problems.

The prevailing hypothesis about Alzheimer’s says amyloid and tau accumulation are necessary for the disease and that stopping the proteins could stop the disease. But it is not yet known what happens when these proteins accumulate in the brains of people with normal memories. They might be a risk factor like high cholesterol levels. Many people with high cholesterol levels never have heart attacks. Or it might mean that Alzheimer’s has already started and if the person lives long enough he or she will get symptoms like memory loss with absolute certainty.

Many, like Dr. DeKosky, believe that when PET scans for amyloid become available, they will be used instead of spinal taps, in part because doctors and patients are more comfortable with brain scans.

And when – investigators optimistically are saying “when” these days – drugs are shown to slow or prevent the disease, the thought is that people will start having brain scans or spinal taps for Alzheimer’s as routinely as they might have colonoscopies or mammograms today.

For now, Dr. DeKosky said, the days when Alzheimer’s could be confirmed only at autopsy are almost over. And the time when Alzheimer’s could only be detected after most of the brain damage was done seem to be ending too.

“The new biomarkers in CSF have made the difference,” Dr. DeKosky said. “This confirms their accuracy in a very big way.”

Editorial: Sharpen That Needle
A. Zara Herskovits, MD, PhD; John H. Growdon, MD
Arch Neurol. 2010;67(8):918-920.
http://archneur.ama-assn.org/cgi/content/full/67/8/918 (as of right now, this is available for free)

Diagnosis-Independent Alzheimer Disease Biomarker Signature in Cognitively Normal Elderly People
Geert De Meyer, PhD; Fred Shapiro, MLS; Hugo Vanderstichele, PhD; Eugeen Vanmechelen, PhD; Sebastiaan Engelborghs, MD, PhD; Peter Paul De Deyn, MD, PhD; Els Coart, PhD; Oskar Hansson, MD; Lennart Minthon, MD; Henrik Zetterberg, MD, PhD; Kaj Blennow, MD, PhD; Leslie Shaw, PhD; John Q. Trojanowski, MD, PhD; for the Alzheimer’s Disease Neuroimaging Initiative
Arch Neurol. 2010;67(8):949-956.
http://archneur.ama-assn.org/cgi/content/full/67/8/949 (as of right now, this is available for free)

“Spousal caregivers confront brutal challenges”

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A local support group member mentioned this article to me at last night’s support group meeting. Someone interviewed in this article makes the point that “spousal caregivers typically take on greater burdens than they can reasonably handle and wait longer to ask for outside help, because they feel like it would ‘betray the relationship’.”

The article ends with this list from the National Family Caregivers Association of suggestions for all family caregivers (not just spouse caregivers):

* Accept offers of help: Do not carry your burden alone. Build a support system from friends, neighbors, family and church groups.

* Give yourself a break: Make a schedule that provides you with some off time to focus on your own needs.

* Watch your own health: Don’t put off doctor appointments. Be sure to eat right and get your exercise — even a few minutes a day can make a difference.

* Review your loved one’s health care coverage: Some health plans for people on Medicare and Medicaid provide support to family caregivers, such as respite care and transportation help.

* Seek expert advice: Care managers offered by some health plans can help you shoulder your caregiving responsibilities by guiding you to resources and services. Joining a support group in your community may also be a major benefit.

An online friend Bill, a hospice nurse, had the following to say about this article:

“Great article! I would personally add that list of suggestions to page one of any caregiver resource manual for [any disorder]. This REALLY hit home with me as I’ve seen caregivers of patients on our service die after refusing to accept help. It’s just horribly tragic. It’s hard to speculate on the motivations of others, but it’s almost as if spouses sometimes feel that its their obligation to carry all of the responsibilities of caregiving alone. The reality is that it’s a 24 hour job and regardless of how much you love the person, we all have human limitations. It’s a beautiful emotion, but love is not enough. I’ve received the impression from some caregiving spouses, when broaching the subject of private or family help, that they perceive accepting assistance as being a personal failure on their part. This is their spouse and they take priority, they will sleep and take care of themselves later. It’s not just drama to say that sometimes later never comes because they die trying to do more that anyone reasonably can.”
Here’s a link to the article: 

http://www.mercurynews.com/family-relationships/ci_15686085

A ‘lonely marriage’: Spousal caregivers confront brutal challenges 
By Chuck Barney 
Contra Costa Times 
Posted: 08/08/2010 08:49:42 AM PDT 

Randomized trial of palliative care vs. no palliative care for cancer patients

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There’s a good article in today’s New York Times about a randomized trial of palliative care vs. no palliative care for cancer patients. Here are excerpts:

* “Those getting palliative care from the start, the authors said, reported less depression and happier lives as measured on scales for pain, nausea, mobility, worry and other problems.”

* “Palliative care typically begins with a long conversation about what the patient with a terminal diagnosis wants out of his remaining life. It includes the options any oncologist addresses: surgery, chemotherapy and radiation and their side effects. But it also includes how much suffering a patient wishes to bear, effects on the family, and legal, insurance and religious issues. Teams focus on controlling pain, nausea, swelling, shortness of breath and other side effects; they also address patients’ worries and make sure they have help with making meals, dressing and bathing when not hospitalized.”

* “Hospice care is intensive palliative care including home nursing, but insurers and Medicare usually cover it only if the patient abandons medical treatment and two doctors certify that death is less than six months away.”

You can find a link to the full article here:

http://www.nytimes.com/2010/08/19/health/19care.html

“Should we have a family meeting?”

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Over the years, quite a few local support group members have needed to conduct family meetings. A local support group member recently emailed me this article that she found helpful in preparing for such a meeting.

Robin

http://www.advancedseniorsolutions.com/caregiverarticles/fullartpgs/Should-We-Have-A-Family-Meeting.html

Should We Have A Family Meeting? 
written by George D. Cohen, LCSW (California) 
Advanced Senior Solutions

Family meetings can be a caring and efficient way to deal with caregiving issues. This article covers common questions and concerns people have when trying to decide whether a formal meeting is the way for their family to best communicate. 

One of the most common questions asked of family therapists and social workers is, “Should we have a family meeting?” The answer is usually “Yes,” because family meetings can be powerfully effective and healing for the caregivers and for the senior who is in need of help. It is one of the best ways to clarify family issues and to reach decisions by agreement or consensus. It’s also an opportunity to give everyone a chance to share their feelings and ideas, and to become involved. Most of all, it is a way to build and strengthen caregiver support systems. A good family meeting can help members come away feeling more connected, energized, and supported. 

Virginia Morris, author of How To Care for Aging Parents, says “If you are the primary caregiver, get your siblings involved right away, perhaps by holding a family meeting. Early on, you may believe that you can handle your parent’s care and that no one else can do it as well. But those reins can become very heavy, very quickly. If you don’t share them now, you may find yourself stuck with them later. In addition to the sheer work involved, this can be a lonely undertaking. You need siblings to share the decisions, the worries, and the stress.” 

In fact, at one time or another most of us will be involved in some type of family meeting. Accordingly, here are some of the most common questions people ask about this topic and some general guidelines. 

Q. What kinds of topics or issues are appropriate to discuss at a family meeting? 

No topic is too big or too small for this kind of gathering. Typical topics of discussion and examples might include: 

* Support. A sibling who is the primary caregiver may be feeling overwhelmed by the demands of an aging and dependent parent. She may ask for more help by dividing up the many weekly tasks. 

* Finances. A sibling has taken time off from work to attend to a frail, bedridden father. He has also laid out a lot of money to cover their father’s medical bills, so he now asks others to share the financial burden. 

* Decisions. An elderly parent has recently broken a hip and may not be able to continue living independently at home. The family now needs to discuss housing options. 

Q. Some of us have anxiety about calling or attending a family meeting. Is this normal? 

Feeling a bit anxious about a family meeting is perfectly normal and natural. It is not an everyday event and we may have concerns about whether we will be able to handle difficulties and whether everything will turn out all right. Also, some of us may be afraid of emotionally charged family scenes that leave everyone drained and bruised. In reality, family meetings can be caring and respectful, and a practical way to to deal with a broad range of family situations. 

Q. Who should call together a family meeting, and who should attend? 

A meeting can be called by any family member who feels the need for greater support and clarity regarding the care of an elderly parent or relative. Often, the sibling already involved in caregiving calls the meeting and invites their siblings, relatives, and others who are close to the senior. Occasionally younger relatives, such as grandchildren who are mature and interested, are also invited to attend. 

Q. Should the senior also be invited? 

This depends entirely on the family situation and the current status of the senior. If a senior is too sick, frail or emotionally distraught, and if a meeting might leave them more exhausted or confused, perhaps they should not be included. If, however, the senior is still involved in decisions involving their own care, they should attend. Their feelings, choices, and preferences are very crucial to family decisions. Also, keep in mind that plans made without the input of the senior are often difficult to carry out. 

Q. How do we prepare for a family meeting? 

Families often find that meeting after having a meal together is conducive to a congenial atmosphere. Also, family meetings are not “business” meetings, but because family business and emotional matters are serious matters, a little preparation can be valuable. For example, any relevant or informative written materials such as doctor’s reports or social worker’s assessments should be made available to everyone ahead of time. If possible, telephone calls should be taken by an answering machine and other interruptions should be minimized. 

Q. Who should lead the meeting and should there be an agenda? 

In truth, meetings can be led by anyone involved. You do not need any special experience to qualify. Usually, however, they are led by the sibling who is already quite involved in caregiving and who feels the need to discuss a particular matter regarding the parent’s current status or their own concerns. 

While having an agenda may seem a bit formal, it can also be very effective. At the beginning the leader should present her own ideas or topics and then ask everyone what topics they wish to discuss. Priorities should be established upfront so that critical matters are given full attention. If time permits, other topics can then be presented. It may also help to write down important decisions, assignment of tasks, and other things to follow up on and distribute it to each participant at the end of the meeting. 

Q. How do we handle strong differences of opinion about important decisions and personality conflicts within the family? 

It is usually best to let everyone express themselves regarding difficult decisions. The key is to encourage respectful listening especially where there are strong emotions or differing points of view. Also, it helps if all participants are encouraged to use “I” statements when they speak, expressing their own personal opinions, and avoid making blaming statements that begin with “you”. Additionally, no one should be allowed to dominate. When faced with challenging situations, some families invite outside experts such as a social worker, geriatric case manager, or pastor who can help moderate and also provide special knowledge or experience which can help the family gain a more objective perspective. 

Please remember that conducting a family meeting is an art and not a science. It takes time to develop a good communication regarding family caretaking. Practice makes perfect over time. Families should, of course, try to follow through on decisions and promises that have been agreed upon. Often a series of shorter meetings are more productive than one long meeting. Families might also benefit from talking to other families who have held successful meetings. 

written by George D. Cohen, LCSW (California)

Typical cerebral metabolic patterns- PSP, etc.

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These Dutch researchers gave FDG-PET scans to nearly 100 patients — 21 with clinical diagnoses of MSA, 17 with PSP, 10 with CBD, 6 with DLB, and some with PD, AD, and FTD.

“Disease-specific patterns of relatively decreased metabolic activity were found in…MSA (bilateral putamen and cerebellar hemispheres), PSP (prefrontal cortex and caudate nucleus, thalamus, and mesencephalon), CBD (contralateral cortical regions), DLB (occipital and parietotemporal regions)…”

“This implies that an early diagnosis in individual patients can be made by comparing each subject’s metabolic findings with a complete database of specific disease related patterns.”

Robin

Movement Disorders. 2010 Jul 28. [Epub ahead of print]

Typical cerebral metabolic patterns in neurodegenerative brain diseases.

Teune LK, Bartels AL, de Jong BM, Willemsen AT, Eshuis SA, de Vries JJ, van Oostrom JC, Leenders KL.
Department of Neurology, University Medical Center Groningen, Groningen, The Netherlands.

Abstract
The differential diagnosis of neurodegenerative brain diseases on clinical grounds is difficult, especially at an early disease stage.

Several studies have found specific regional differences of brain metabolism applying [(18)F]-fluoro-deoxyglucose positron emission tomography (FDG-PET), suggesting that this method can assist in early differential diagnosis of neurodegenerative brain diseases.

We have studied patients who had an FDG-PET scan on clinical grounds at an early disease stage and included those with a retrospectively confirmed diagnosis according to strictly defined clinical research criteria.

Ninety-six patients could be included of which 20 patients with Parkinson’s disease (PD), 21 multiple system atrophy (MSA), 17 progressive supranuclear palsy (PSP), 10 corticobasal degeneration (CBD), 6 dementia with Lewy bodies (DLB), 15 Alzheimer’s disease (AD), and 7 frontotemporal dementia (FTD).

FDG PET images of each patient group were analyzed and compared to18 healthy controls using Statistical Parametric Mapping (SPM5).

Disease-specific patterns of relatively decreased metabolic activity were found in PD (contralateral parietooccipital and frontal regions), MSA (bilateral putamen and cerebellar hemispheres), PSP (prefrontal cortex and caudate nucleus, thalamus, and mesencephalon), CBD (contralateral cortical regions), DLB (occipital and parietotemporal regions), AD (parietotemporal regions), and FTD (frontotemporal regions).

The integrated method addressing a spectrum of various neurodegenerative brain diseases provided means to discriminate patient groups also at early disease stages. Clinical follow-up enabled appropriate patient inclusion.

This implies that an early diagnosis in individual patients can be made by comparing each subject’s metabolic findings with a complete database of specific disease related patterns. (c) 2010 Movement Disorder Society.

PubMed ID#: 20669302 (see pubmed.gov for this abstract only)